On Sunday 19th June baby Ronnie had an ambulance called out to him after he went very hot and started turning blue the paramedics rushed him to Margate hospital where they tried to stabilise him but we’re struggling to do so and had to call the specialist team in london but as Ronnie was not stable enough to travel at that point they come to him , after having to shock his little body twice they were worried about moving him incase they needed to do so again Ronnie’s mum Nicole was told to prepare for the worst and they was not sure if he would make it to the london hospital , BUT HE DID he arrived at st Mary’s hospital in london the doctors done some tests but found he would be better at a heart specialist hospital so they have transferred him to another hospital where he was in a coma in critical condition. Each day the hospital reduced Ronnie’s ventilator waking him regular and slowly taking him of the breathing machine baby Ronnie has been diagnosed with restrictive cardiomyopathy which is a rare heart disease, Ronnie was doing so well up untill Wednesday 29th June when his heart rate went upto 180 and he started to struggle the hospital then had to sedate Ronnie and re fit the breathing tube they have said it is now 50/50 again and confirmed that he had a total of 4 infections.
Fast forward to Monday 11th July 2022 Ronnie’s infections come down from 265 to 15 meaning they could continue with the tests they needed to do for the transplant assessment he had a cardiac cauterisation , the results come back showing his lung pressures where not as bad as they thought they would be meaning he would no longer need the lung transplant which was amazing news .
Around the 8th august Ronnie started to stabilise, was having physio and awake a lot more with lowered sedation and playing but started to struggle due to oxygen flow so he had to be intubated again the day after he had to be intubated his infection markers started to rise so on Wednesday 10th august his PIC lines where changed but while they were being changed Ronnie went into cardiac arrest for 52 minutes the hospital managed to place him on the ECMO machine which you have a maximum of 14 days on . We were also given advice that they do not think he would handle comming of this machine so we had an option of turning his machines off !!!
Ronnie had been on the ECMO for 4 days and on Sunday 14th august the doctors said they needed to change the wires as they were clotting so they went ahead to do that and Ronnie went into another cardiac arrest the hospital managed to get Ronnie back onto the ECMO which he remains on now . There has been very scary talks with doctors and each time it seems to be getting scarier some of the nurses have been amazing and we cannot thank them enough for Ronnies care . The hospital are still currently running tests and doing scans to make a decision and plan for Ronnie but if for any reason it comes to the worst we as a family need to know we exhausted every option and avenue private opinions and anything it will take to save our boy the family have been through enough since last September loosing their beloved Carla who is Nicole’s sister (Ronnie’s auntie) we cannot loose Ronnie
We appreciate any kind of help and advice including legal and human rights if you have any information that may be helpful to us please contact us on either the Facebook page “supporting baby Ronnie” Instagram supporting_baby_ronnie or by emailing [email redacted]
If you have any ideas or would like to help with a fundraising event please also contact me i would be happy to help with that x
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